My Story

My connection to Mayo Clinic and Rochester, Minnesota is a very emotional one. This world famous medical facility and small city has done so much for my family. It is not just about Mayo Clinic the facility, but also about the town of Rochester, Minnesota and the people who make up this community.

Please read my story if you are wondering if your home town doctors and hospital are really the “final word”. If you are questioning and having doubts about the mindset that many believe that “if the doctor said it is so, then it must be,” then read my story.

If, after reading my story, you see similarities in your own situation or similarities in a member of your family or a friend’s situation, I hope you will then come back frequently to read my blog updates. Do not give up! Keep researching and looking for new answers and help! Over and over, it has been my experience that the seemingly hopeless diagnosis that some doctors give is not the reality. You need another opinion. You should consider getting that next opinion from THE MAYO CLINIC here in Rochester, Minnesota!

Ask yourself, is your doctor putting your needs before his own needs or is he only building his business/practice in order to buy a bigger house, a bigger boat, or a more expensive car? If you spoke to him in the grocery store would he stop to ask about you and your family? Before he gave you or your loved one their diagnosis, did he consult other experts and come to a collective decision? Did he research all of the options before making his decision? Were you and your family a big part of that discussion and decision? If not, then you should read my story and consider coming to Mayo Clinic. In 1989, my father became very ill and was admitted to our hometown hospital where we lived at in Wichita, Kansas. Illness was rare for my father, who had experienced good health for most of his life. When he was hospitalized, he was initially diagnosed with seafood poisoning. Even after several weeks and seeing numerous specialists in Wichita, his condition worsened.

The specialists in Kansas took weeks to give us any feedback on the cause of his illness and spent very little time talking to us about it. Worse, they spoke very little amongst themselves about his condition. The specialists worked, for the most part, completely independent of one another. I quickly lost confidence and respect for these doctors and specialists who spent little time with my family explaining the current situation and what was being done to make my father well again. The doctors were often hours late coming in to my father’s hospital room. When they finally arrived, they were in such a hurry to leave. They never sat down to talk to us and they always had their backs to us on the way out the door. I remember that the lead doctor would hurriedly leave the room only to go out to the nurses’ station to flirt and joke with the nursing staff. And yet, he had just left my father’s room like he was off to perform a major surgery. When it came to the nurses, there were some who did sincerely try to help, many who even tried to explain what was happening, and a few who truly cared about us. However many of the nurses did not. It was very apparent they hated their job and could care less about the patients and their families. It seemed that they were only working for a paycheck. These nurses often tried to give my father medicine that was supposed to be given to the patient in the next room and vice versa. Unbelievably, this happened many times. It was so bad that our family could not and would not leave my father’s side because we feared he would be given the wrong medicine or would begin to rapidly fail and none of the medical staff would notice.

My father’s illness grew worse and the only thing the doctors and specialist would tell us was that my father’s liver was completely failing but that they were not sure why. My dad fell into an unconscious state and his respiration and heart rate dropped so low so many times that we thought we were going to lose him. The lead doctor would daily dash into the room once (obviously doing so because of the hospital’s policy) to flip open his chart and give us no news.

A photo of my family after our return from Mayo Clinic in Rochester, Minnesota. My father is smiling and full of pride and happiness at my sister's college graduation. This was a photo that only a few months prior we never thought would be possible. Mayo Clinic was the reason my dad literally lived to see this day! Pictured from left to right are my wife Jody, my father Ken, my sister Lisa, myself (Fran) and my mother Diana.

Finally, I had had enough. I could see my dad was barely hanging on. I cornered the doctor in the hallway of the hospital and asked him what he was going to do for my father. He said there was nothing he could do and that he did not expect my father to make it through the night! I told the doctor that I heard someone mention a “liver transplant.” “No, no, they are not doing those anymore,” he replied. “They tried a few in California and did not have any luck with them. No one is doing them anymore.” He said all this without any emotion and without any sense of caring what-so-ever!

I was furious. I rushed home to the World Wide Web and found a web page about liver transplants at Mayo Clinic in Rochester, Minnesota. I found an emergency phone number and called it. It was a Sunday afternoon, and I knew it was a shot in the dark, but that uncaring doctor had just told me that my dad would most likely die that night! The operator at the Mayo Clinic answered the phone and I asked to speak to someone who did liver transplants. She explained it was Sunday and the clinic was closed except for the hospitals. I told her that this was an emergency and my father was dying here in Kansas. Somehow, I managed to persuade her to give me the cell phone number of the doctor who I later found out was in charge of the transplant team at Mayo Clinic. I called and he answered from a family picnic! I explained that my father was dying and that the doctor in charge of his care had told me that liver transplants were not being performed anywhere anymore. He said that this was absolutely not the case and that he was currently doing liver transplants in Rochester. I told him I was going to find some way to fly my father up to Rochester and asked if he would help get my father admitted there at Mayo Clinic. He said that “Yes,” he would!

So, I jumped to look in the phonebook and found an air ambulance service in Wichita. I asked if they could take him to Rochester, Minnesota today, even though it was Sunday! They said “Yes”! After going from a helicopter that took us from the hospital to the airport to board an “emergency room in the air” with a surgical flight team inside a Cessna King Air, we arrived at the emergency room at Mayo Clinic’s Methodist Hospital in Rochester, Minnesota. A team of doctors went to work and quickly stabilized my father’s condition. In a matter of 12 hours, we had gone from an uncompassionate doctor in Wichita who called my father’s condition “hopeless” to a team of doctors in Rochester, Minnesota at the world famous Mayo Clinic. The doctors at the Mayo Clinic stabilized my father and told us that in the following weeks they would begin the process of discovering the cause of his illness. They would even evaluate the possibility of a liver transplant!

My family went to bed that night for the first time in Rochester, Minnesota with a radiant sense of hope. We could not believe the change in our outlook for my father’s fate and our family’s emotional turnaround. For the first time since my father had become ill, we experienced HOPE! We were so amazed at the level of professionalism and caring that we received from the Mayo Clinic staff. Their friendliness and hospitality were evident from the moment we stepped off the airplane ambulance at the little Rochester airport to later at the hotel and even at the late night diner. Everyone was so comforting and so welcoming on our very first night in Rochester! My family and I will never forget the night we arrived at this fantastic medical facility. We will always remember the warm feeling we experienced from the people of Rochester, Minnesota!

The next morning in Rochester, Minnesota at The Mayo Clinic!

The morning after my father’s arrival in Rochester, we met with several doctors in the emergency room at Mayo Clinic’s Saint Mary’s Hospital. The difference in the quality of care was like day and night from our home town hospital. These doctors were actually sitting down and talking to us! In fact, they stayed until all of our questions were answered. My father was stabilized and regained consciousness later that day. Within days, he was actively taking part in his own care with the team of doctors and working on the best course of action to combat his illness. At Mayo Clinic, they work as a TEAM. Many doctors visited and talked with my dad and to our family. Then they met as a group and decided together on the best diagnosis, course of care, and treatment. My father was scheduled for several tests in many of the different departments that make up the very large Mayo Clinic complex of buildings.

During the following week of testing, consultations, and meetings, it was discovered that my father had a genetic disorder called hemochromatosis – a condition in which the body’s organs retain iron. When severe, hemochromatosis can cause the body’s organs to shut down. Unfortunately, this was the case with my father’s liver. The doctors at Mayo said that my father did need a liver transplant and he was placed on the list to receive a new liver.

We worked with the insurance/billing department at Mayo Clinic and found that not only was my father’s care and treatment covered by the insurance, but that they would cover more than they would have at our hometown hospital. We soon discovered that Mayo Clinic knows the rules and knows who to talk to at the insurance companies. We also learned that insurance companies who might try to intimidate smaller hospitals or doctors would not try the same tactics with Mayo Clinic! It is a common misconception that Mayo Clinic costs more and the insurance pays less than ordinary hospitals. Most of the time the opposite is true!

My father and mother decided to get a nearby apartment in Rochester as they waited for a liver to become available – a process we were told could take a few weeks to even a few months. Rochester has many fine hotels, but after several weeks it gets very expensive. It was nice for them to be able to have their own kitchen to cook in, their own coffee pot, their own linens, etc. Though my dad was in a weakened state, they were still able to tour the hospitable and charming town of Rochester. Though it was now the peak of winter in Minnesota which can be bitterly cold, we rarely had to go outside because Rochester’s downtown is connected by an underground/above ground subway and skyway system. This is not the dingy and drab tunnels you might initially visualize. My parents found the miles of subway and skyways to be climate controlled and full of shopping and dining. So, in the middle of winter, people going to Mayo Clinic walk around the downtown area and never need to wear a coat! In fact, most hotels are connected to these subways/skyways. You can even leave your room or apartment in the morning without your coat and can comfortable travel back and forth through the subway system to attend your many appointments between the many different Mayo Clinic buildings.. Over the next several months, my family became very familiar with all of the amenities in the subway/skyway system and downtown Rochester.

Finally, a call from the hospital came to say that they had found a liver for my dad. We later learned that it came from a donor that lost his life in a motorcycle accident. The family of the deceased gave the “gift of life” by agreeing to donate his liver to my father. Mayo Clinic sent a specialized medical team, now referred to as Mayo Air, to pick up the liver because time was of the essence in preserving the organ. As the Mayo Air Team lifted off to collect and transport the liver, the surgical transplant team went to work prepping my father for surgery. The amount of coordination and people involved was unbelievable. They had everything perfectly timed so that when Mayo Air’s helicopter landed on top of Mayo Clinic’s Rochester Methodist Hospital and the transport team came down the hallway with my father’s new liver, the transplant team was making the first incision: the beginning of an 11 hour surgery.

The following early morning, my father came out of surgery with more tubes and wires coming out of him then you could possibly imagine; however, the doctors said it went very well! They said my father had a very strong heart that served him well for the very long 11 hour surgery! When my father began to regain consciousness as the anesthesia wore off, my family crowded around his bed as he spoke his first still groggy words: “A person should be born and stay born here,” he said. It was obvious when he said this that he was very weak and barley awake, but his words came out as a very powerful statement that somehow summed up our journey to get to this exciting moment. From our horrible experience with medical care in our home town to this wonderful new town and medical facility where they gave us the gift of life, to this very moment when my father and our family knew he was going to live! The Mayo Clinic is the very best medical facility in the world and the small town of Rochester, Minnesota is full of many talented and friendly people who have dedicated there lives in one way or another to participate in the enormous successes of Mayo Clinic. It is not just Mayo Clinic, the facility, but it is also the committed people of Rochester, Minnesota who participate in giving their patients the very best care they can possibly receive!

I hope after having read my story you will find inspiration to read my blog on a regular basis and even consider making the trip to Rochester, Minnesota. Do not give up! Do not take one doctor’s or group of doctors’ word for you or your loved ones’ serious diagnosis until you make the trip to Mayo Clinic here in Rochester. My father and family went from a self-centered, indifferent local doctor and a hodge-podge of disconnected local specialists who literally left my father for dead, to landing in Rochester, Minnesota at Mayo Clinic.

The people that make up Mayo Clinic truly live by what their co-founder Dr. William Mayo stated 100 years ago: “The best interest of the patient is the only interest to be considered.”